How are people with liver mets doing?
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Hi all. I think we finally figured how to get on here and discuss! I love the zoom support group each Monday but I have not engaged here.
I too have liver Mets. I am on my third drug regimen; ibrance for the first year before metastasis, Afinitor for two months and now verzenio. Will have scans again 12/6. My question/concern here has to do with ports. I am a swimmer so want to be fitted, if it will be necessary, for a port small in size and infection resistance. There was some discussion but I would like more information for those in the know. Thank you all so much
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Hoisholt
I have a port. My first one was a little bigger and I’m on the smaller side -aka nothing to my chest , so it stuck out like a sore thumb. My second one is slimmer and smaller. Can I still see it ? Yes. But it’s better than my first one
There should be no risk of infection for swimming once it’s all healed up so I’d imagine you might have to avoid swimming until then. But it’s a pretty quick recovery.
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hoisholt,
I don’t have liver mets, but I do have a port. I have a Bard Petite Power Port. It is implanted in the little hollow where my shoulder meets my chest. I have never felt that I had to limit physical activity because of it and it would only be visible in spaghetti strap or halter tops (at age 65, I don’t wear those much). I am thin and have narrow shoulders but am not sure if that influenced placement. I hardly even know it’s there.
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Hoisholt, if you wear a particular kind of swimsuit, you might want to draw the outline of it on your chest and talk to the interventional radiologist about placing the port where it will not be directly under the edge of the suit, as the pressure might be uncomfortable.
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Dear Katty, sorry for a "chemo no go"... Low neutrophils might show that chemo is still working, as Halaven has a long nadir ~2 weeks. I don't think all people recover in 7 days after the lowest point, delays I hear are very common with this chemo. For sure you'll be able to continue on the 1st of November! Saulius
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Thank you so much, Saulius. As always you are a wellspring of support and information! I normally take things like this in stride, but this past month has been very rough for other reasons, so I wasn't ready for even a little disappointment. Thanks again.
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Katty you are now on Halavan too? So I guess aside from your neutrophils you are doing good ? I did the last time too
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Nicole, I had my first infusion on Monday October 11th. I didn't have any pre-meds. I haven't had any problems that are noticeable except for two mornings that I woke up feeling hot, thirsty, stiff-necked, and very light headed when I got up at 5 to feed our dogs and cats and had to sit down on the kitchen floor and holler for my husband to wake up and come help me to the couch and feed them. After about 45 minutes I felt fine.
This has happened before a few times on the other chemos and only for a day or two. It didn't even occur to me that it might be because I'm running a fever on the mornings that it happens, I will have to remember to check my temp next time.
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Nicole, does Bestbird still have a conventional treatment guide? Have you looked at it for possibilities?
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Husband...I don't think I have the guide anymore....anyone know how I can get it??
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Just send Bestbird a PM with your email address.
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Regarding Bestbird's The Insider's Guide to Metastatic Breast Cancer:
In August 2021 she told me that she had "asked the MBCA to update it to the current link here: https://www.insidersguidembc.com/order Please use this link in the future, as it always refers to the absolute latest version (paper back, eBook, complimentary .pdf)."
So I believe that is the most up-to-date instruction on how to get the guide in whatever format you would like.
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I am sure that I am off topic here, but bare with me or redirect me please. I have had liver mets since Oct 2019. I am on Ibrance and get Faslodex injections. I saw the doctor/nurse practitioner monthly at the same time getting injections and labs that included a CA 15-3. The CA 15-3 is the first indicator that discovered my mets. In 2019 they were in the 100's. They eventually stabled and been in the 50's this year. I moved in August found a new oncologist. My last CA 15-3 test was done in August and was 119. I did not find this out until last week. The September visit and the October visit, I went to the lab and to get my Faslodex injections. I did not see a doctor/nurse practitioner nor did they do a CA 15-3 test. I have called and asked the nurse and they just tell me that they do not do this test as frequent and I would have to talk to the doctor on my next visit in Novermber. I called my previous doctor and they said sometimes the CA 15-3 can very between labs.
My question: Is there anyone with the experience of people changing doctors and their CA 15-3 varying. And also, seeing their doctor less frequent than monthly? This just seems odd to me since the last time my CA15-3 was this high, there were more than 3 tumors in my liver, the largest being a 7 cm. I still have multiple tumors, but have been stable the past year, thankfully. Any advice would be greatly appreciated.
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Kattysmith,
Sorry to hear that you couldn't do your second infusion. 2.1 seems like a high threshold. Everything I've been on seems to have a 1.5 threshold for the first infusion and 1.0 for the second. Wonder why it's so high for Halaven? Are you getting Neupogen shots to increase your neutrophils?
Glad that you're not experiencing any bad SEs.
Hugs, Susan
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Kglee-
This is all so nerve-wracking, isn't it? When are you due for your next scans?
The following comment is always included with my CA-15 results:
"Testing perfomed on [insert lab/assay name here]. Values obtained with different assay methods or kits cannot be used interchangeably."
My last CA-15 values were a little higher (×2), but still lower than the last time tested by that lab.
I've been "PET negative" since February, so I've been spreading my visits with my MO out. I had just gotten to 6 wks for labs (w/TMs), 3 mos for consultation - unless I had new symptoms. I was going to go to 6 mos between PET-CT scans. Now, I'm relocating to another state, so I'll scan at 5 mos, and have a MO consult before I go. It will either give me peace of mind or establish urgency for getting set up with a new MO immediately.
It's important to note -
My MO and I discussed and "negotiated" my treatment schedule. He suggested spreading out visits, and considered my concerns for timing of consultations/TM testing. I didn't have any definitive symptoms at dx, so the lab work gives me a measure of comfort. Otherwise, they may not have tested TMs as frequently.
-and-
TMs are not reliable for everyone (mine seem to be sensitive), and some MOs never even test TMs.
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Dear Katty, damn, I did not understand that the number in the brackets was the NEU number:/ 2.1 is really good and is not even considered as ,,1st degree neutropenia", so I wonder why your MO made that decision. I believe your numbers used be too good:) We all know how incredible your body is - my Sandra got back to >2 only after 2 years without chemo, and while on chemo she was always in 4th degree neutropenia without Neupogen shots:/ I know the ,,chemo" situation is frustrating and you certainly did not need it but next chemo round will be easier for you when on the 1st of November your neutrophils will be higher. Trust your MO.
Dear kglee, in any case, your CA15.3 is not high at all and the "rise" cannot be associated with any progression. if it continues to rise, only then you should be worried. You have a record of CA15.3 measurements and have to know if it really coincides with your disease dynamics. And for sure CA15.3 varies between labs: different calibration, equipment, regents used, etc.
Saulius
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Thanks so much Susan and Saulius; your comments are really reassuring! It's been a long time since I've been on any treatment that affected my neutrophils so I really wasn't sure about the number. Maybe my MO is just being extra cautious? I'm supposed to see him on the 29th and will discuss it with him then. I haven't been scheduled for any neupogen shots as yet, but two more weeks should be plenty of time to recover.
I just want to get this show on the road!
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thank you for that information.
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Good info. When I swim at a public place I always wear a sun screen long sleeved top. My main concern is it getting infected
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Thank you to SeeQ and BSandra for your advice. BSandra, I know my my CA 15-3 is not as high as some of those on this page. But it is for my case and my records. As you know each individual cancer is different. But is good to know it can very between labs.Also, wanted to know if is unusual for the schedule of testing and seeing the doctors varies. I guess that is all I should have said. Just trying to find answers in this new norm we have. I always regret trying to post here. Praying for all you.
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kglee - please don't regret posting here, and definitely don't feel judged (if that's what you're feeling). Everyone's situation is different, but we also have so much in common, and we can all learn from each other. Hope to "see" you again soon.
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kglee, I see my oncologist every 3 weeks because I'm on chemo. I have a CT & bone scan every 3 months. Tumor markers are included in my labs every 3 weeks but they've not been very predictive for me so my doc said to ignore them right now.
In your case, with a move to a new dr, I'd want more follow up and clarity about how they intend to monitor you I can see why this is worrying.
& I ditto what SeeQ said.
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Okay, I talked to the nurse and she said that postponing the treatment was due to my absolute neutrophil count being too low, not my WBC of 2.1
I did complain that they had pushed my next treatment out too far, so now I'm scheduled to have an infusion on the 25th as long as my blood work is fine.
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Hi hoisholt! I was on the Zoom call this week - glad you made it to the forums!
The port is totally encased under the skin, so you just need to wait for the surgical site to heal and then you're fine with swimming.
The risk of infection with ports comes with actually using them. They have to pierce through the skin & an implanted port is considered a type of central line. If proper sterile techniques aren't used, there's a risk of sepsis. So unlike for an IV, when they access it they will create a sterile field, use sterlie gloves (not just procedure gloves) and prepare the site with the type of skin wash as used in surgery.
hth!
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Thanks Moth. Good to know! Mine is now in - just recovering today. It was a pretty simple procedure, no sedation required in my case. The lidocaine was the worst part with mostly some tugging. Today I’m a bit sore but my pain meds took care of it.
Glad to have it in place! And super happy that I won’t have to worry about infection once it heals. I had a PICC line 20 years ago and it was a bit of a pain. No baths and always concerns about possible infection. Yeesh!
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Sadieservant,
So happy to hear that you got your port. I love mine and do heavy-duty, contortionistic yoga and modern dance without noticing it. Have had some temporary issues with getting blood return but that is all resolved.
Enjoy, Susan
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Dear Katty, oh, now it is clear - WBC, not NEU was 2.1! Anyway, 1st of November is not so far and we all wish your counts go up. Higher WBC = feeling better and more prone to infections.
Dearkglee, never regret writing here. We all learn here together, and every thought or knowledge might be very important for someone.
Saulius
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Just spoke to MO.... TAPUR trial said No they wont open to let me in.... I guess it wasn't meant to be ...right now..anyway.
We are going to dose reduce Halaven again to 50% now. I am praying for no fevers!!!!
Scans should be Nov. 29th.
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Nicole,
I received "Metastatic Trial Talk" in my email today -- I haven't really gone through it very thoroughly, but it focuses on trials dealing with MBC. Here's the link:
https://metastatictrialtalk.org/new-metastatic-bre...
I noticed that they have the new trials for this month, but also trials for the last two months that are enrolling. Perhaps there is something in there that would be helpful to you.
Good luck with the dose reduction. Maybe that will do the trick.
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Nicole, I really hope and pray the reduced dose is tolerable. No doubt they have looked into options about something to offset side effects. Some sort of anti-pyretic. I recall my wife was once prescribed something like prednisone during one of her treatments, to counter some side effects. Can't remember what kind of chemo it was, but it did work. Unfortunately it caused something of a mania like exhilaration while she was on it. I think she was getting burning scalp and rash, and that was why they prescribed it. I've also read on here about, and I can't recall exactly, but it was something like benadryl.
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